Undiagnosed chronic pains and other symptoms

[meggers90]

Hi, My name is Megan.
     I am 18 years old. 130 lbs. A little over a year ago I suddenly became really sick when I was at work. I got really dizzy, tired, started sweating, shortness of breath, became very weak, and shaky. Got really scared and started crying...They had someone drive me home and throughout the night I couldn't sleep because my whole body hurt really bad. I went to the doctor and they said it was some sort of virus. I started having lots of pain in my legs which eventually became mainly my hips(switching from side to side). I got through times when my legs hurt so bad, and feel so weak that sometimes I can barely push the gas pedal in my car. I have had pretty bad fatigue ever since. Ive been to so many doctors and have had so many tests but am not really satisfied. I used to be a soccer player for 13 years, and now i'm proud of myself to get up the stairs without wanting to cry. I go through periods of extreme nausea. My hips hurt very bad, my back hurts (in the center, from neck to butt). My ankles, elbows, and wrists get very sore to the point that I can hardly use them. I'm always short of breath.
      For a while my drs thought Lupus, but they kind of ruled that out...then Addisons disease, ruled that out. Ive had brain scans to check for MS but come back clear. Ive had all kinds of gastro intestinal tests and tried several different meds for the nausea...nothing showed up on the tests, and the meds don't work. The nausea comes and goes now. I went to a Rheumatologist (actually 2) and tested HLA-b27 positive. I'm now taking Sulfasalazine, Diclofenac, and now prilosec. That doctor suspects a spondyloarthropathy, had a x-ray of my spine, and thus far there is not spinal fusion. I don't feel like hes being aggressive enough. The pain hasn't got much better. I don't sleep well at night, I usually wake up between 2 and 4 am from the pains and then cant go back to sleep.
      Within the past 5 months Ive been having pretty bad pins and needles feelings in my legs. And very painful (almost feels numbing) pains in my arms. Most days I can barely lift my arms above my head. I get chest pains at least once a day usually. The pain in squeezing and very tight on the left side of my chest and lasts about 30 seconds each time, sometimes it goes down into my arm and across my collar bone. I now can no longer lay on my left side because it becomes so painful that I cant breathe. Sometimes I have this sudden twitch which is very embarrassing, it is usually just one leg, but sometimes it is strong enough to jerk my whole body.
      My last period was 28 days long, which was miserable (I'm already on birth control). That certainly did not help with my fatigue. And I have started bruising a lot(everyday)..I think this might be a side effects from one of my medicines. I also get this reoccurring pain in my lower abdomen on the left side, it too is a squeezing pain that doesn't last more than 45 seconds but is so bad it causes me to kind of curl up.

Does anyone have any suggestions, ideas, or thoughts. Im pretty lost with all this, and have no desire to continue going to the doctor because I never feel like I'm getting anywhere, and tend to just feel I'm being a pain in the butt. Any advice at all would be greatly appreciated!

[meggers90]

A little update..I saw my gynocologist today, and she felt a large mass on my left ovary..dont know yet if this is tied in with everything else going on..I go in for a pelvic ultrasound on Monday.

[sleepySophie]

I'm sorry to hear that you have to deal with this. Pain is so exhausting and doctors are so harsh towards patients in pain.It's. I've  been in your shoes. I ended up with more than one DX. One from a cardiologist, a neurologist.  Keep trying like the others suggested.

[Mollyrae]

Hey meggers:

Sorry for the mis-spell of your name. I'm glad to hear that you have future appts. Please make sure that you keep Tuck and I informed. We'd like to hear what the Doc has to say. We are always here for you. Don't be afraid to send either one of us a personal message. Please take care,
Molly

[meggers90]

Thank you so much for your advice and encouragement...

I have been tested for Lyme's Disease once, negative. The only blood test I forgot to mention in my post was ANA. I have had a positive ANA for 14 months, my last one was 1:670..I finally did find a doctor who said he wouldn't keep testing it because at this point it had been positive for so long that it wasn't going to magically go away (Thank goodness).

I have tried googling my symptoms and ive tried putting them in WebMD....The things that pop up are typically, Multiple Sclerosis, AS, Lyme, multiple different cancers, Lupus...and they typically pop up saying "if you are experiencing these symptoms go to the nearest ER immediately". Which is comical because I've done that before and received very little useful help. Sometimes I feel like looking up things on my own sometimes scares me even more.

  Im still going to the doctors..I have a gyno appt on 12/19, my general physician on 1/5 and my rheumatologist on 1/25.  We'll see how those go.

[Mollyrae]

Hello merrgers and welcome to the Pain Forum:

I think it is very important to keep at the Doctors. There is no doubt that something is going on and it just has not been diagnosed yet.

Rare or uncommon illnesses are sometimes very hard to detect if the Doctor is not specifically looking for that particular illness and sometimes it takes years to finally came to a diagnosis. I know it is very easy to get discouraged, I know I have but like Tuck said, don't give up. Eventually the Doctors will find the source of your illness and will be able to treat you accordingly.

Have you ever tried googling your symptoms and make a list of possibilities for the Doctor. You never know...Maybe it will give the Doctor a lead.

I am sorry that I don't had any really good advise for you as it sounds like your at the end of the rope. Please take care and good luck in the future.
Mollyrae

[Tuckamore]

Hi Merrgers90,

Welcome to our Pain Management Forum on MedHelp. I am so sorry to hear about all your pain. You are too young to be suffering this much. I know that pain knows no age but you have a long life ahead of you and you deserve to be much more comfortable than you are currently.

Are you seeing a physician often? Are you contacting them and informing them of the new symptoms and the fact that your pain is not controlled? If not, you should most certainly do so asap. If they are not responding to your complaints or addressing your concerns than you need to see another or additional physician(s). A new team of physicians will have fresh eyes and may see something that was missed. Often it take a little thinking outside the box.

There are a multitude of conditions you could have from fibromyalgia to ones I couldn't even guess. Have you been tested several times for Lyme's disease. One, sometimes two tests can be negative and you can still have this disease. There are also virus's that begin a chain of events that lead to disease conditions. So it is imperative that the search for what is going on in your body be aggressive and on-going.

If all else fails than I suggest that you see a PMP. The teams at a PM Clinic often know all the new approaches to pain management and they can be extremely helpful.

I am sorry I do not have the answer to your symptoms. Please don't give up. You need to be aggressive in your search. Don't take, "I don't know" for an answer, move on to the next medical provider. Only you can push for answers. Please keep us updated on your progress. I will look forward to hearing from you. We are here for you, even if that means you just need to vent or chat. Take care my dear and hang in there. Good luck to you, Tuck